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The Heart Transplant Journey

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Waiting for the Heart Transplant

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Waiting for the Heart Transplant

Waiting for the Heart Transplant is an anxious time for the patient and the caregivers. The timeframe may not always be easily determined and depends on the NOTTO status, blood type, size and the wait time itself. Once cleared for transplant surgery, the patient is enlisted in the National Organ & Tissue Transplant Organization with varying degrees of urgency.

  • 1A - Extremely sick patients in the hospital with IV monitoring with temporarily sustained heart function
  • 1B - Patients may or may not be in the hospital; but require IV monitoring and mechanical device to stabilize heart
  • Status 2 - Outside the hospital and stable for now.
  • Status 7 - Temporarily out of the transplant list.

In most cases, the wait for you continues at home and is dependent on whether you need IV medications?and other devices to support your heart. The heart transplant team's goal is to maximize your treatment and enhance your quality of life during this period. Since hearts can be transplanted only within a short time of being taken from the donor, you may be asked to move temporarily near the hospital; and be available to be contacted immediately if a donor heart becomes available.

In the interim period, while waiting for a donor heart to be available it is vital to stay fit and adhere to the treatment plan provided by the doctor. Follow the diet recommendations and remain active with moderate exercise regime approved by your cardiologist. It is also recommended for you to see your dentist and your primary care doctor as per instructions. Please check of any excessive weight gain and inform your cardiologist of the same.

  • During the waiting period it is important to avoid.
  • Heavy cleaning such as vacuuming, sweeping, or mopping
  • Isometric exercises or weight lifting
  • Excessive physical activity
  • Playing golf, tennis, basketball, football, or soccer

Driving, if possible, should be avoided or undertaken only with the consultation of the doctor. It is best to avoid alcohol altogether. Alcohol makes the heart more vulnerable to irregular heart rhythms. The same guidelines apply to smoking.

Also, it is vital to remain positive and stress-free during the wait period. Continue to live your life by seeing family and friends and participating in activities you enjoy. You will be invited to join a support group led by our clinical social worker. The group consists of other patients waiting for transplant as well as patients who have received transplants and their families. This group can provide valuable information and may be a source of emotional support. A separate support group for care givers is also available.